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Key worker

One person, usually referred to as a key worker, case manager, care coordinator or team coordinator initiates effective and timely response when needs change.

A key worker:

  • maintains regular contact with the person with MND
  • initiates effective and timely response when needs change
  • liaises with other team members and services
  • organises regular case conferences and team meetings.

Who the key worker is depends on:

  • local health and community care service availability
  • the professional interests of individual health and community care professionals.

The key worker may be a:

  • case manager
  • general practitioner
  • local occupational therapist, physiotherapist or speech pathologist
  • MND clinic nurse
  • MND regional/care advisor
  • MND shared-care worker
  • neurologist
  • palliative care professional
  • other health or community care professional with particular expertise in MND symptom management.

Victorian Government Department of Human Services 2008

A coordinated approach with effective communication and liaison between health professionals, regardless of the setting in which the clients find themselves

After diagnosis, people with MND may find themselves negotiating an often inflexible, occasionally expensive and sometimes disjointed healthcare system, while coping with the trauma of a recent diagnosis. They must simultaneously come to terms with the prospect of reduced life expectancy, reduced income as their ability to work diminishes, confusion about help and support mechanisms, the disappointment associated with their lost future and fear for their family.

Compounding this experience for carers is the lack of communication and coordination between health and social service providers creating a further barrier to adequate care because of the resulting delay in providing services to people with MND (Motor Neurone Disease Association 2002). Hospice workers have also reported that communication problems were of concern and contributed to problems managing people with MND (Carter, McKenna et al. 1998). A study of carers and former carers in Australia identified a range of issues that included the lack of ongoing coordinated care as a significant contributor to poor palliative care (Parker, Forster et al. 2004).

An Australian study of five carers for people with MND reported their desire for increased information about resources and how to access services in the early stages after diagnosis and the importance of a case coordinator experienced in the care of people with MND as integral to avoiding a “palliative care crisis” by anticipating future requirements (Dawson and Kristjanson 2003). The role of the key worker becomes one of maintaining clear communication of current and anticipated needs with all service providers involved in the management of the client in order to deliver optimal palliative care.

Carers reported that health professionals often waited for families to ask about end-of-life care and this discussion therefore began too late in the disease trajectory (Dawson and Kristjanson 2003). Investigators have shown that effective and timely communication among health professionals is an important factor in realising a patient’s wish of staying at home while receiving optimal care.

A coordinated approach with effective communication and liaison between health professionals, regardless of the setting in which the clients find themselves, is proposed as a mechanism to address some of the concerns of both health professionals and carers.

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